On a weekend I wanna wish it all away, yeah.

Day one of no prednisolone has been a small disaster. With most drugs, the effects stay in your system for a little while, but my experience with steroids has been very different; the day after the final dose is taken, everything returns. It’s what happened with the rash on my hands and feet. Less than 24 hours and I was covered again. So it’s no real surprise that today revolved around a renewed pain and stiffness – especially stiffness. I’d forgotten how limiting it can be.

I’ve been sleeping in the spare room recently, and last night was no different. There are a number of factors as to why – the air is cooler in there, the little white single bed has an orthopedic mattress, I feel safe surrounded by “my things” (it’s almost a copy of my old bedroom at my mother’s house; entirely subconscious on my part but it does give me a recognisable haven to retreat to) and I also feel safe knowing the only person to witness the pain is myself. After all, just because it now has a name and a reason, doesn’t mean I’m not still somewhat ashamed to be seen squirming around like a wounded animal. I feel horribly like a burden when S hears me complaining, so I try to limit how often I open my mouth on the subject. It’s difficult. On days such as today it envelopes my entire being.

 

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So. S and I have lived in the flat for almost a year now. Crazy how time passes in such strange ways. The last twelve months have been some of the hardest of my life, yet I got through it somehow. I confess to having no idea how that happened, as I’ve been stuck behind walls of varying painkillers, watching the world go by. As it is, the morphine is doing very little for the ankle pain – the discomfort and stabbing feelings seem to come from inflammation, and it’s only going to get worse now I’m off the prednisolone. I can’t take NSAIDs either. My mother is going to speak to my rhuematology nurse next week to see if there’s anything at all they can do before I see the consultant in October.

I’m just not convinced I can keep doing this. Waves of pain. Brief relief, then it all comes back, worse than ever.

I’m feeling a little despondent.

It could have been a brilliant career

It seems keeping up with writing isn’t something I’m very good at now. I’m not sure I understand it; the time is there, but it all seems like such a chore. It feels a little unfair saying that since this blog has been a lifesaver for me on more than one occasion, but the days of typing thousands of words regularly seem to have disappeared. Perhaps it’s simply a lack of concentration – my GP has doubled the prescription of slow-release morphine and it’s a knockout dose, even for me.

However, I do feel like writing a little tonight, if only to distract from the nagging coming from the Infamous Ankle. The prednisolone course finished yesterday; it hasn’t been particularly effective for a couple of weeks now, since the dose reduced to one a day, but I’m still worried what the next few days will bring. The morphine helps but only does so much, as the pain appears to be coming from the actual inflammation of the tendons. I now know that’s a normal symptom of psoriatic arthritis, and I’m feeling slightly bitter that there were so many signs of this over the past two years. So many signs. They could have had me on steroids earlier. The prednisolone exceeded all expectations on the higher dose and I was able to walk almost normally and my sleeping patterns improved hugely. For the first time in years I was able to see my ankle bone, and my shoes fit properly. The joy on the first day I could walk to the local shop was… well, I was very, very happy. S and I even took a walk around the block, as I haven’t been able to do that once since we moved in almost a year ago. I missed a lot, all because the doctors missed everything.

Still… can I afford to be bitter? Probably not. I’m going to be stressed enough with the inevitable return of the ankle swelling without piling more problems on top.

 

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I also finished the methotrexate course last week. That drug has been a… nightmare. A pure case of the cure being worse than the illness. I’ve been repeatedly asking everybody why I’m putting myself through the side effects – vomiting, constant nausea, sweating like a pig, sleeplessness, mania – even though I know it was my choice. I didn’t rush into taking MTX; I considered it over a week while I waited for x-ray and blood results to check I was able to take it in the first place. I considered it incredibly carefully.  In all my years of medications, I’ve never taken such a dangerous drug and it was a difficult decision. Still… I think I made the right one. If it slows the progression of the disease, surely it’ll be worth all the sleepless, sweaty nights with a bucket by my side and a helping of paranoia?

I hope so. Strangely, I feel even worse for not taking it this week. I just hope this isn’t a sign of things to come.

Wrong way on a one way track

Can you help me remember how to smile, make it somehow all seem worthwhile?

How on earth did I get so jaded?

Depression is a cruel, cruel illness. It robs you of the ability to give a damn.

I find it incredibly difficult to write about depression with hindsight. It’s far easier to force myself to open the laptop when I’m feeling utterly sunk in misery and numbness, and explain it in real time. Otherwise… I can’t begin to describe how it feels to be trapped so far within myself that the outside world is just a whisper in the background.

For weeks – months – I have slept during the day and lain awake at night until the sun rises. Attempts at righting my sleeping habits have been pointless; the pain dictates what I do, and when I do it.

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So, am I free? Almost. Today, I managed to wash the dishes, tidy the bedroom, water the plants and do two loads of washing. That’s that most useful I’ve been in months. Strangely, I haven’t needed a single painkiller today up until thirty minutes ago. Last night, my foot was swollen to the point where the outline of the damaged tendon was clearly showing, so I don’t know why I’ve been granted a small respite today. All I can assume is that my plan of keeping my foot off the floor as often as possible (I’ve invested in crutches) is working. True, I hate having to stay on the sofa, and it’s horrible knowing spring is somewhat here but I can’t go for a walk or even down to the garden (too many holes in the pathway), but perhaps it’s paying off. It has to be better than last month’s buckets of ice water and boiling hot towels.

I’m trying everything. Which is… a good sign, I think. Over the past week I’ve started thinking about the future, and that’s something I didn’t think I’d feel happy feeling. I’d given up entirely, and I almost felt safe there. Does that make sense? Failure is… easier, somehow.

On Saturday, I had an MRI at Liverpool Hospital. The week before I had ultrasounds at the same hospital. In nine weeks, I see the rheumatologist again. Until then, my GP is giving me regular codeine prescriptions and, if I need them, I can ask for morphine patches. I’m wary of doing so; I don’t want to leave myself with no options. I get used to opiates far too easily.

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So… the codeine. It’s going okay, actually. There have been a few days where I’ve taken more than the recommended dose, but that was purely through pain. So while I’m still not entirely responsible… I’m learning. I’ve learned a lot of lessons recently, and one of those is that painkillers are important. When you’re in so much pain that you could rip your own face off, the last thing you care about is abusing painkillers to escape the fear. You just want to escape the pain, and let them do the job they were designed for.

Oh, it’s not easy. I’m constantly on my guard, and I know it’s something I’m nowhere near over. Addiction is… well, it’s an addiction. It’s come back far too many times for me to ever say I’m over it.

They’re not perfect. Tramadol was much more effective, but I couldn’t be doing with the apathy and constant nausea. So I still have pain, it just becomes easier to ignore. That’s why opiates are so perfect. They don’t remove the pain, just stop you caring.

Like depression.

One day, perhaps this will stop happening. I’ll stop losing it, and life can run more smoothly.

 

So why don’t you slide

Earlier, S asked if I fancied a takeaway – curry from our favourite restaurant – and I agreed. Later he went out with a friend to buy some tools. They’re working on the basement beneath our flat, as technically that’s included in the rent. It’s currently filled with the last owner’s belongings; stacks and stacks of paintings, canvas, frames, lamps, chairs, books… Bob was a hoarder, and a painter. His work’s pretty good actually. Now he’s dead and his wife is in a nursing home (she went downhill very rapidly when he died), somebody has to clear it all. The basement is pretty big, taking up most of the floor space of the house, so it’s a mammoth task.

Anyway, while they were out I got a call from S. He asked me if I wanted to go to the restaurant with his mates instead of getting a takeaway.

Did I do the right thing when I said, “it’s okay, I’m not up to it. You can go along anyway”?

I wasn’t lying. I’m truly not up to it. I tried going for a short walk earlier, and by the time I returned, I was struggling to breathe and sweating like crazy. It’s been so long since I’ve had ‘proper’ exercise. That walk used to take me five minutes. Today, it took thirty.

Straight away S’s tone changed; the first time I’ve ever really heard it do so. He said, “oh. Okay. But we were going to have a takeaway.”

I shrugged him off, “it’s fine, I’m really, really not up to it. We can do it another time”.

He agreed, but… he didn’t sound happy. It’s only when I ended the call that I began to feel that familiar twinge of panic.

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Oh god. Oh god oh god oh god you fucking idiot oh god oh god.

I have never once done something (to my knowledge, anyway) to make S angry or disappointed. Unlike my relationship with O, I’ve managed to keep my irrational emotions in check; at least until I’m alone. I’m so determined not to fuck this up. I know it’s classic BPD to say, “oh, I love him so much, he’s my everything, I want to be with him forever” but all that’s got me in the past is a string of disastrous relationships and far too much bitterness. I almost have my head around that now, and the medication certainly helps me keep the more extreme aspects of my behavior in check. So while I know that these feeling might be BPD tricking me and that mental illness has a habit of making me cling to somebody like fuck… I want to believe this is real. I’m pretty sure I know, deep down, I love S with all my heart; how could I not? He’s the only man who has never condescended me. Who has never given me reason to suspect him of wrongdoing. The only man who I’ve felt comfortable enough with to let the mask slip.

I know I love him.

And now I’m scared.

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So what did I do? I went straight for the Tramadol.

I’m now sitting at the kitchen table, trying and failing to calm myself with a joint. The urge to crawl into bed and hide under the duvet is overwhelming.

There is a light that never goes out

When I lived with my mother, there were often times when the only source of entertainment was to write. There are only so many cheap horror films someone can watch before they all drift into one, and only so many charity shop books you can buy before realising you’ve read pretty much every regularly-donated text. Back then, my days were entirely upside-down; sleep during the day, and lie in bed at night, typing away. It’s because of this – the ease of settling down to write in the past because the nights were impossibly long – that I’m now finding it difficult to balance my everyday life and the virtual world of my blog.

On the whole, my life isn’t much busier. Since moving in with S, I haven’t taken up any time consuming hobbies, and days rarely get so exciting that I fall into bed, exhausted. In fact much is the same; just with added domestic duties and a slightly better sense of night and day. I just find it difficult to juggle both living in a “normal” situation, and writing.

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Now, after months of half-hearted posts and putting off the important stuff, I’m stuck in a situation where I have so much to write about that it has become an impossible task. I bypassed the guilt long ago – I’ve been looking after myself a little, for once – but now… I’ve somehow got to squash it all into one post because putting it off is only making the problem worse, and I know that in the long run writing about all this is good for me.

Not only that, but I somehow have to try and make some sense, which isn’t the easiest of tasks on 200mg of Tramadol. I appreciate this post may be a little… disjointed. Trust me, it’s nothing compared to how my mind currently feels.

When I posted the Letter To My Consultant a few days ago,  I had actually already seen him the Monday before. My mother and I travelled 25 miles by taxi to meet with the specialist who had agreed to give me a second opinion. I had expected to fight to to be taken seriously – again – but I can honestly say that he was never anything less than courteous, and I left the appointment feeling buoyed up by the simple fact of just being listened to. It’s all I needed. Someone to sit, listen, and offer advice. Once, I thought that the NHS was built around trying to help patients, but over the past few years my faith in it had slipped to the point where I didn’t even see a reason to have an NHS if they can’t achieve the most simple tasks.

Now, some faith has been restored. And all it took was for somebody to shut up for five minutes and actually listen to me.

It should never have been this hard.

Lot 40 - Alison Englefield Headings -Paranoia

I don’t yet have a diagnosis, but that no longer matters to me so much. The promise to try and control the pain is enough for now, and although Tramadol probably isn’t the smartest option for someone who fought addiction for so many years, it’s one which works, and while I’ve certainly been craving the pills, I haven’t abused them, nor do I have the real urge to. They’re important, you see. The only thing I needed to truly escape from was the physical pain, and Tramadol goes some way towards making it more bearable.

Also, S isn’t stupid. He knows of my addictions, and he knows it’s something which haunts me every day. In the past, nobody’s truly tried to take control over it, but S simply isn’t the sort of man who would let me abuse painkillers. Now we live together, it’s something I can’t really hide – the tiny pinprick pupils and staring into space are a dead giveaway – and although I know I’ll always struggle with the urge, I suspect S will never go easy on me if he finds I’ve been abusing them. I wouldn’t want him to go easy.

The consultant said that if Tramadol doesn’t work, the next step is morphine patches. Again, he listened.

So I don’t have a diagnosis, but there are a couple of conditions which are being bandied around. Rheumatoid arthritis. Psioratic arthritis. Psioratic seems more likely, based on where the pain in my fingers is and the nail loss I’ve been experiencing. Rather than just saying “well, it’s something, but we don’t know what” – which is what I’ve been hearing for years now – my consultant explained that while they may never be able to fully diagnose me because rheumatic conditions can be so complicated, they will “do their best“. In this case, that means an MRI scan, ultrasounds on my hands and feet, referral to a pain clinic, and my first full examination since I started on the journey to find out what the hell is wrong with my body. I have begged for these tests so often in the past that I assumed I would have to do the same at this appointment, but I didn’t even have to ask. For the first time, I’m being physically tested. My first set of bloods have been done. They even did a urine sample, which my local hospital has never bothered with.

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I came away from the appointment knowing a few things; that whatever it is will “most likely be lifelong”, that I will “probably always need pain relief”, and that there are doctors out there who still do their jobs properly.

I’m okay with it being lifelong. I feel like I’ve lived a lifetime of it already, so a few more decades can’t be much harder.

Maybe now I can settle. Enjoy living here. I’ve lived with S for six months, and so much has been ruined by my health. Maybe now… I can feel okay.

“Well, I had no confidence in my ability to dent another human’s life”

Sometimes it’s impossible to even think of a title to a post, let alone which words to use. Being stoned doesn’t help, but it’s the only way I’ve been able to cope today; it was either dope, or masses of co-codamol and a bout of self-harm. I figured weed was the safest option.

Where to begin? It’s past 2am, and I’m still furious from the orthopaedics appointment this morning. As usual, nothing was achieved – my consultant wasn’t even there, and I saw a junior doctor instead, who couldn’t do anything except repeat what I’d already been told at my previous appointment – and I’m furious. I’ve had enough. This officially isn’t fair, and I’ve stood back and let this happen over and over because I haven’t wanted to cause any problems.

Well, fuck that. I’ve been in constant agonising pain for over eighteen months. I can’t walk properly and need a stick most of the time. Ice? I can’t leave the flat if it’s even slightly icy, because I have no balance. I can’t sleep. I can’t exercise. It’s all I can think about, and even strong painkillers (which I’m doing my best to avoid, for obvious reasons) only take the edge off slightly. I’d gladly take back the colocystitis pain over the constant needles and cramps in my foot.

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I got home, and cried. Smoked a joint and ranted to myself for a while. Mentally calculated everything in the flat I could possibly hurt myself with. Considered making myself sick. Ate half an egg sandwich then threw it out. As it is, I haven’t eaten since; I’m hungry, but the gnawing feeling in my stomach is comforting. It’s… control.

I feel very out of control.

Since S came home from work, he’s been cheering me up immensely; so I’m coping okay. I haven’t taken any codeine, or hurt myself. Oh, the urge was there – I thought about it the whole taxi ride home – but you see… if I hurt myself, I hurt S too. It’s strange for me to feel that way, because in past relationships I’ve never truly accepted that my tendency to damage myself could have any effect on my boyfriend. It wasn’t that I was being selfish, it’s just… well, I had no confidence in my ability to dent another human’s life.

I don’t want to hurt S. He’s my world. I know I can’t care about myself, but I adore S. I assume that much is obvious from my past posts.

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danielleflanders.blogspot.com

I’ve been thinking a lot about where I go from here, and I believe my only option is to put in a formal complaint of medical negligence. As much as I’m tired of fights… I refuse to go on being treated this way. From the first time I saw a consultant for PCOS, right through to today, I’ve had sub-standard medical treatment and every single condition I have has been made worse by lack of action and misdiagnosis. I don’t think any of this is fair, and I’ve got to stand  up for myself at some point.

And so, to hospital

I hate hospitals.

Really, really hate them.

Since childhood, I’ve been paraded around them for various reasons; hooked up to so many machines I hear the beep in my dreams. I’ve been sick on so many hospital floors, and each and every single hospital visit – be it a planned appointment or a trip to A&E – has left me a nervous wreck.

I’m not ashamed to admit this: I just can’t cope with it. The smell. The horrible lights. The feeling of vulnerability and the worry you’ll never sleep properly again. The strange faces and unpredictable noises… and the memories of the times I’ve been really, really ill. Vomiting up black stuff all over the polished A&E floor, tripping on morphine and hooked up to every piece of machinery in the world. Happily floating on a cloud of prescribed IV opiates, not giving the slightest damn about anything but going to sleep and not waking up again.

So yes.

I really hate hospitals.

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But I also hate being sick. Admitting to a phobia of vomiting sounds weak somehow; it’s hardly the worst thing to happen to a person, but it utterly terrifies me. I suspect it stems from years of bulimia; controlled vomiting is entirely different to actual sickness, and it’s the lack of control I can’t cope with. Vomiting for days on end and being unable to take my meds, wash, dress myself, eat, drink, or even sleep in the same bed as S… it all took its toll, and I ended up in A&E this morning, wired up to a drip and covered in heart monitor pads.

I admit, it wasn’t the plan.

I had an appointment with my GP this morning – to check up on my medications, which need to be raised or changed, how the pain is going… I didn’t make it, because I was busy concentrating on not vomiting in the taxi on the way to hospital.

If you’ve never been scared of being sick, you can’t imagine just how terrifying it is. Every movement, every sound, every thought even… if you feel nauseous, anything can and will set you off, and it’s utterly horrible when it happens. I’ve never vomited as an adult and not had a panic attack during. It’s not a pretty situation.

So I lay there. Sat up. Lay down again. Went to the toilet a million times. Couldn’t get comfy. The only time I’ve been on my own in A&E before is when I took an overdose – the latest in a line of them in my later teens – and my mother flat-out refused to accompany me. I resented her at the time, but I understand why now. I tried to quell the panic by browsing the internet on my phone, reading boring BBC news stories about absolutely nothing, trying to pretend everything’s okay.

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Also, there was an added fear. One I haven’t mentioned to anyone, not even the doctor; I figured anything abnormal would show in the blood and heart tests. A few days ago I was in so much pain – agonising, screaming pain – that I caved, and begged everyone I know to find me some ‘proper’ painkillers. Z turned up with some 30mg co-codamol and, later, a strip of tramocet. Now, I’ve spoken about my little opiate problem before, but recently it’s been pretty dormant. I haven’t felt the need to self-medicate or block things out with tiny white pills.

However, fever doesn’t work well when you’re trying to be sensible. I accidentally took far too many painkillers; I don’t know how or why I did it, just that I took more than three times the recommended dose. It was in no way a suicide attempt, because I wasn’t truly aware of what I was doing. I just wanted the pain to stop, so I could finally get some sleep.

Then, days and nights of vomiting. Sweating; that horrible chemical-tinged sweat you get with opiates. Hallucinations and awful nightmares.

So that’s how I found myself curled up on a hard bed in A&E, trying to explain my ridiculous medical history, clutching an emesis basin and hating everything hospitals are.

I just can’t cope with them.

They scare me.

 

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